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Story Bank: Mainers Standing Together for Medicaid

Lester was laid off from Great Northern Paper in East Millinocket in February 2014, before the company closed in June.

He collected unemployment benefits and soon gained seasonal employment with Murphy’s Lawn Care. When Lester lost his employer provided health insurance in March, he enrolled in a Marketplace health insurance plan.

His spouse, Penny, worked as a cashier at Hannaford. She was facing medical challenges and needed to have her gall bladder removed. During the surgery, her surgeon nicked her intestines which led to an infection and a three-week stay in the hospital.

Lester and Penny were making a combined $14,400 a year and were worried that health insurance would be far too costly for them.

Luckily, Lester and Penny qualified for a subsidy through the Marketplace. They were content with their $12.85 monthly premiums for their health insurance. In January 2015, their premiums increased to $30 a month. They still felt comfortable with the price, and continued their enrollment.

Soon, though, their Marketplace insurance plan became unaffordable, and they were forced to forego insurance.

Penny went back to work soon after, but continued to have infections and needed to stop working. Penny received Social Security and Disability Insurance and enrolled in MaineCare. Lester, though, was still uninsured.

They were making plans for an upcoming surgery for Penny when Lester began to feel ill.

He was having severe stomach pain and had been losing weight for weeks. The pain was insufferable.

After running some tests, his doctor said it was likely a stomach virus and sent him home. Several weeks later, Lester boarded and emergency helicopter and was flown to Bangor, and then Lewiston.

Lester died on the operating table in Lewiston from two clogged arteries that feed blood into his digestive system.

Penny was told that not even a colostomy would have saved him. He passed away on August 16, 2017 at the age of 56. If Lester had health insurance, he might still be alive today.

Ashley, Augusta

Like most parents, Ashley and her husband have a busy schedule. Her husband drops Ashley off at work, drops off their four children at school, and heads to work himself. He picks Ashley up on his lunch break and she assumes all car duties from there.

Their schedules don't allow for much flexibility. If a health challenge were to arise, their busy schedule could turn chaotic.

Ashley works for the Southern Kennebec Child Development Corporation as an assistant cook. She has health insurance through her employer, but it is far too costly to add family members to her plan.

Her husband works 40 hours a week as an outbound sales agent. He does not have health insurance, and has been living uninsured for nearly a year-and-a-half.

Their children are enrolled in MaineCare. "The kids are at least covered," she said. "That takes a lot of that anxiety away."

Ashley's story is common in her community.

"A lot of the people I know have families and they have kids," she said. "Their kids are covered, but they're not covered."

Luckily, her husband has not had any medical challenges while uninsured. Their primary care physician has played a large role in helping uninsured community members receive the medical treatment they need by accepting cash payments.

"I think that if we didn't have our doctor, it would be a little more nerve-wrecking," she said.

Ashley is concerned that many families are experiencing the same inaccessibility to health coverage.

"In our state, you have that big gap of people who don't have insurance," she said. "I run into people all the time that don't have health insurance, that don't have MaineCare, or they can't afford Marketplace insurance. It would be nice to not have people who are just making it have to struggle. You either have to choose to pay for your health insurance or all your other necessities of life."

Jim, 64, East Millinocket

Jim worked at the Great Northern Paper Company from 1971 until the mill closed in 2014.

After he was laid off and his employment insurance ran out, his income was reduced to $166 a month. He could not qualify for MaineCare, and he could not afford private insurance. He has been uninsured for four years.

While working in the mill, Jim experienced a heart attack and has been living with cardiac challenges ever since. At the time, a majority of Jim's medical bills were covered through his employer's health insurance program.

Whenever Jim experiences chest pains, he takes his nitroglycerine medication. On one occasion, he took his medication, but his symptoms did not subside. He knew his medication had expired. After a dosage of nitroglycerine and four cardiac tests were performed at his local hospital, he was left with a $14,000 bill. Now, he is learning to navigate the health care system without the help of his employer and without access to MaineCare.

In addition to his heart challenges, Jim is living with diabetes. He recently obtained some health care coverage through Veterans Affairs, where he receives his medication, aside from his insulin. While there is a copayment associated with his medication, the cost of his medical equipment, including his needles and glucose monitor, come out of his own pocket. The needles are often too expensive, and Jim is forced to reuse them.

Jim is only one year away from qualifying for Medicare but his wife, Melissa, must wait five more years. Luckily, when MaineCare is expanded in July, Jim and Melissa will be able to access the health care they need. However, it is impossible to know if any medical challenges will further impact their health in the meantime.

Donna Wall, 60, Lewiston

Donna Wall is a round-the-clock caregiver for her three adult children living with autism. When Donna’s two sons turned 18 years old, she lost MaineCare eligibility.

Each night, when her children are sleeping, Donna goes to work as a newspaper carrier.

During Donna’s overnight, four-mile newspaper route, she has to be aware of her surroundings at all times. During the winter, she has to be careful of ice patches that are invisible by night. Recently, Donna tripped and fell on her chest, potentially fracturing a rib.

Additionally, Donna has forgone medical care for her anxiety and necessary annual eye exams. Because she no longer qualifies for MaineCare and cannot afford private insurance, she did not seek medical help for fear of extraneous health care bills.

When time allows, Donna donates plasma to help supplement her income, but still cannot afford private health insurance.

Even though Donna’s children still live with her, she cannot qualify for health insurance through MaineCare herself. If Donna had access to health insurance, she could receive the care she needs and worry less that an illness or injury would burden her with medical debt.

Sandra*, 57, York County

"When I left for work that day, I was not expecting that I would be out of work." -Sandra

………….

Sandra was working as an in-home aide for children with behavioral needs when she sustained a traumatic brain injury.

"The first thing I said to my coworker was, 'I can't go to the hospital. I can't afford to miss work. I can't afford to go to the hospital,'" said Sandra.

Sandra was afraid that her hospital bills would far exceed the costs her Marketplace health insurance would cover. "The neurosurgeon said I had a brain bleed, and I started crying,” said Sandra. “I could have died because I was worried about money."

Sandra spent much of her academic career studying psychology, but she never quite knew the extent to which people are impacted by brain injuries, until the accident.

Sandra's brain bleed has impaired her neurological functioning including processing speed, reaction time, coordination, and memory, in addition to her vision—to the point where she can no longer drive.

"I am still seeing double and am light sensitive," said Sandra. "Things don't compute as fast and I don't see things and process them like you're supposed to. I can't drive. Once you can't drive, you have access to nothing."

………….

After Sandra's brain injury, she began receiving workers' compensation, which helped to supplement her income but put her over the income limit to qualify for services like MaineCare and SNAP, the Supplemental Nutrition Assistance Program. Her workers’ compensation income did not count in the Marketplace to qualify her for a subsidy. To qualify, she has had to liquidate her retirement savings.

"I found myself in a place where I couldn't get Marketplace insurance unless I took a certain amount of money out of my retirement account to qualify me," said Sandra. "It became, 'Well, that's not enough to qualify you to get assistance, so you have to take more out.' I make too much in workers' comp to qualify for any services.”

Because she is not working and has no steady stream of income, her health insurance is becoming increasingly unaffordable.

As a former state employee, she does not qualify for social security disability insurance, even though she is living with a potentially lifelong disability.

"The doctors so far say I likely won't go back to work, but I am still hopeful that I will," said Sandra. "If I don't, I don't know what is going to happen because the small amount of money I have left [in retirement savings] is not going to last very long."

At 57 years old, Sandra has quite a few years left before she can qualify for Medicare, so she must struggle to pay for a health insurance plan that costs too much for her restricted budget.

………….

Aside from the stresses of navigating the health insurance system with a brain injury, Sandra is dealing with the stress of maintaining relationships with loved ones.

She raised four children in York County whom she was close with. Since the accident, their relationships have shifted.

"Being a brain injury patient, it's not a bonding experience for families," said Sandra. "It is and continues to be very stressful. People are like, 'How do you stay home all day?' and I'm like, 'Honestly, I haven't felt good enough for that to be a problem.' My big outings are going to doctor appointments.”

Nearly two years have passed, and Sandra is still learning to cope with her brain injury and find ways to pay for the health insurance she needs.

"When I left for work that day, I was not expecting that I would be out of work," Sandra said, somberly. "Everybody says you know that things happen for a reason. I have not yet found the reason."

*Name has been changed to protect storyteller.

Dawna, Farmingdale

Dawna is a 58-year-old single mother of five. When her youngest son was seven, Dawna and her husband divorced. She was left to raise her sons on her own all while operating a home-based child care center. Her sons were covered by their father’s state worker insurance, but Dawna was uninsured and paying out of pocket for yearly exams for many years. She couldn’t afford the cost of mammograms and pap smears, some of the most vital and highly recommended preventative screenings. She had applied for MaineCare but was denied. Once her youngest son graduated from high school, she closed her child care center and got a job as a Certified Residential Medication Aide at MaineGeneral’s Alzheimer’s Adult Day Services in Gardiner. She thoroughly enjoyed every minute of her work and absolutely loved the residents. Finally, after years of being uninsured, Dawna had health insurance.

In late July 2016, Dawna received a long-awaited mammogram and was sent to Augusta for further testing. Within three weeks, she had been diagnosed with breast cancer that had spread to her lymph nodes. Her doctors swiftly scheduled her for a bilateral mastectomy. Three weeks after surgery, she began an aggressive six-month regimen of chemotherapy followed by almost daily radiation treatments that lasted for six weeks. Unable to work, she utilized her 12 weeks of unpaid medical leave. On November 30, 2016, her 12 weeks were up. Her job was terminated and so was her health insurance.

The Harold Alfond Center for Cancer Care assisted Dawna in applying for and obtaining help from the Maine Centers for Disease Control Breast and Cervical Cancer program. Because the cancer treatments impacted her capacity to breathe, Dawna obtained Social Security Disability Insurance and now qualifies for MaineCare.

Dawna was uninsured for 13 years. She missed countless preventive screenings that would have identified her cancer at an earlier stage and minimized the medical debt associated with treating later stage cancer. Luckily, Dawna had access to the health care programs before her cancer progressed to an untreatable state, but had she been enrolled in MaineCare, she would have been receiving the health care she needed all along.

Leisa, Livermore Falls

At 37 years old, Leisa lost her job when Carleton Woolen Mills in Winthrop closed its doors. With her job, Leisa lost her health insurance which covered her four children, one of whom is living with autism.

While she was employed at Carleton, Leisa underwent gastric bypass surgery to help manage her medical challenges. The surgery helped to reduce her use of insulin for her diabetes, but she soon faced other challenges. When she lost her health insurance, she could no longer afford yearly wellness exams and appointments with her nutritionist.

Her family enrolled in MaineCare. But when her children turned 18, she lost that coverage, too. Since then, her diabetes has not been properly monitored. Consequently, she lost vision in one eye and has had to undergo costly corrective laser surgery. All the while, Leisa was working as a full-time, unpaid caregiver for her mom who was also struggling to have her health care needs met. The care Leisa provided allowed her mom to stay at home instead of going to a long-term care facility.

Leisa is thousands of dollars in medical debt and requires further surgery to regain her vision. This isn’t likely to happen because she simply cannot afford it. The necessary medical care she needs to maintain her health is also out of the question. For now, she must go without preventive, routine screenings.

Leisa now works part-time as a cashier, and although the income is helping her keep afloat, her job does not provide health care and she still cannot afford the health care she needs. She looks forward to Medicaid expansion, when her health care challenges will be monitored, and her needs will be met.

Lynnea, Lewiston

What kinds of struggles have you seen in your community among your neighbors?

A: "I've seen young single moms just trying to wrangle their kids. I've seen grandparents who never see their grandkids but still have to go and do things, that need help getting up and down stairs. I've seen families where mom and dad are working their tails off, but they're still struggling."

How long have you been without health insurance?

A: "I've been without health insurance for a little over a year now, inching towards a year-and-a-half. I had a good job that gave me a stipend to help with health insurance but my pay was just enough to make me ineligible for MaineCare. My stipend wasn't enough to cover insurance. It would cover about half of it. So, I was in that place where I could get it, but I couldn't afford it, and I am still kind of stuck their right now."

Do you have any medical conditions that require treatment?

A: "I have a tooth that started going bad last fall and when it first started, it was excruciating. Just eating was not happening. It hurt too much to even think about eating. Anything hot or cold was just incredibly painful, nonetheless chewing. The nerves are now dead, but it's still tender so if I chew on that side of my mouth, it hurts. What gets to me is knowing that I could do something about it, but I can't afford to and someone, somewhere has decided that I don't deserve health insurance. I'm somehow unworthy to get my health issue dealt with. That's what kills me. It's the thought that I'm not good enough."

How has lack of health insurance impacted you?

A: "So, I try to be very careful about what I eat, how much I eat, when I eat just to make sure that I'm not pushing myself towards diabetes. I'm honestly a little afraid of what my first conversation with the doctor is going to be."

Why is Medicaid important to you?

A: "I don't feel that your health should ever be a question. You should not have to ask yourself, 'Do I eat for the next two days or do I go to a doctor?' No one should ever have to decide between paying their copay or feeding their children."

Rita, 40, Auburn

Rita is a mother to twin boys, studies nutrition sciences at Kaplan University full-time, and is an active volunteer in the Auburn community, all while working on her family’s 99-year-old farm.

"We have always been agriculturalists and into growing fresh food, but what really sparked my interest in nutrition science was having that background and a son that has severe allergies," said Rita.

Both of Rita’s sons have faced various medical challenges since they were diagnosed with lead poisoning at one-and-a-half years old.

"They were meeting all the milestones and starting to walk, and then suddenly, they stopped," said Rita.

One of her sons developed sudden physical health challenges, and her other son further regressed developmentally and now has a diagnosis of Autism Spectrum Disorder. Thankfully, when Rita was pregnant with the twins, she was eligible to enroll in MaineCare.

"We are really, really fortunate," said Rita. "I don't know what I would have done without MaineCare coverage. I really couldn't afford to have health care on my own, even when I had a full-time job."

When Rita broke four bones in her foot and ankle a few years ago and needed health insurance most, MaineCare provided her with coverage for her surgery and post-operative care.

"If I had not had MaineCare in place, I don't know what I would have done,” said Rita. “I really don't. And if I had any other insurance and had to pay out-of-pocket, or had to access my short-term disability or long-term disability through my workplace, I don't know if I even could have afforded the medical bills.”

Because of MaineCare, Rita can access the health care she and her sons need and she has been able to work, attend school, and volunteer without the worry of an illness or accident setting her back.

"It's really helped me get through this stage in my life where I am trying to improve things for the better," said Rita. "I am really trying to build a life for my children, and I want to be self-sustaining and contribute to my local economy, my neighborhood, and the people around me. Any way that I can help get that done, I think that's what those things [like MaineCare] are there for."

Chris, Winslow

Chris grew up in Harmon, a little town northeast of Skowhegan. His father owns a construction company and his mother is a longtime seamstress. Chris worked for his dad installing septic systems and doing road construction for 12 years until about a year ago when he moved to Winslow to be with his partner and her three children. He now works part-time as a spare driver for Kennebec Valley Community Action Program. Chris also takes care of the children – ages 14, 12, and 3 – after school and while his partner is working.

Six years ago, Chris noticed a mole on his chest. He did not have health insurance at the time. He put off going to the doctor until one day, he knew something was wrong. He went to the doctor at a walk-in clinic in Pittsfield. They removed the mole right away. When the biopsy came back, it was positive for cancer. The clinic immediately sent him to a doctor in Brewer that specializes in treating cancer. Soon after, he was sent to a surgeon in Bangor. The computerized tomography (CAT) scan alone was $10,000. “I could’ve put a down payment on the machine,” said Chris. His surgery was another $10,000.

Luckily, Chris qualified for MaineCare and got the care he needed to deal with the cancer, but it wasn’t a simple path. “They took two inches right under my neck," he said. "They glued it instead of stitches. I ended up with a crook in my neck for a year and had issues with my shoulder. Still, I was the one in the family that took it the best."

After a few years, Chris’s MaineCare eligibility was reviewed and due to the state of Maine not accepting Medicaid Expansion funds from the federal government, Chris found out he was no longer eligible and lost his MaineCare. Now, Chris worries about addressing his health care needs and making sure he doesn’t face cancer again. “If it came back and I had to sustain testing, I couldn’t afford it,” he said. "It’s better to treat something early when its benign than when it’s overgrown and there’s little that can be done or it’s very expensive at that point. I am sure if I let the melanoma go longer, it would’ve spread through my body and my chances would’ve been very different.”

Dr. Barbara Covey, Oakland

What does your typical day look like?

A: “I see people from all walks of life. I see people with minor injuries, hangnails, and bruises, cuts, and colds, and coughs, and sore throats to people with serious medical problems like heart attacks, pneumonia, serious traumas. So it varies but I pretty much see the gambit of what there is to see.”

What do you like most about your job?

A: “The part I like the most is the interaction with the people. I think there’s nothing more privileged than having that close an interaction with people, being that close to their lives, learning their stories, and being able to have an impact, perhaps, on them and they have an impact on you because everybody has their own history, their own story, and I think we all learn from each other.”

Do you see patients without health insurance?

A: “So, I think in the emergency department, we do see a disproportionate number of people without insurance and without access to health care. Just this last shift, I saw a woman whose diabetes was out of control, hasn’t seen a medical provider for over a year, and hasn’t been on medications for over a year, and was having complications of her medical problems because of that lack of care.”

What are some daily challenges you face in the medical field?

A: “A large number of people don’t have those resources, don’t have that luxury of having access to the services that they need meaning, after I see them in the emergency department, they will not necessarily be able to do XYZ as recommended and their outcomes are not going to be as good because of that and that’s a very frustrating piece of delivering medical care in today’s society. The hopelessness is really palpable. When I’m saying to someone, 'I would recommend this or that, and this is what I’m concerned about', and there’s just this sense of, 'Well, that’s great, but how are we going to achieve that? How is that going to happen? What am I supposed to do that I haven’t done already?’ Sometimes I can work with care management and social services to work things out, but that’s the hardest part. The sense that there is just no way that they’re ever going to be able to achieve their health objective because they don’t have the insurance to do that. It’s hard enough to deal with illness without being able to at least use the tools and the treatments and the medicines that should be available to that person for treatment.”

Why is MaineCare important to our community?

A: “How do you think you might be covered? What do you think your safety net might be? If you have children or if that happens to your parents...health care is just a basic necessity. You know, think about what it might mean to you as an individual if you were in this position, and keep mind when you’re doing that, what it means to the state and to our community not to have everybody covered for their health care needs and hopefully realize that it’s short-sided to think that this is not a necessary piece of our community support."

Susan Weir, 54, Saco

Susan was diagnosed with HIV in 1985, when she was 21 years old. She underwent an exploratory surgery that resulted in her doctor preforming a full hysterectomy, requiring a blood transfusion.

The blood supply had not been tested until five weeks after her surgery.

She was one of the first women in Maine to be diagnosed with HIV.

"Somebody told me, when I was first diagnosed, they didn't know what to do with me," said Susan.

Susan currently falls into the health coverage gap. She makes too much to enroll in MaineCare, but too little to afford health insurance through the Marketplace Exchange.

“Before I went on disability, I earned too much money to have MaineCare," said Susan. "I ended up trying to go directly to drug companies so I could get my medication. It has not been an easy ride."

Although Susan is just dollars over the MaineCare eligibility guidelines, she receives some medical coverage through the Benefit for People Living with HIV/AIDS waiver program and the AIDS Drug Assistance Program (ADAP).

"ADAP has been a big help," said Susan. "If they didn't give me the waiver, I would be, pardon the expression, screwed."

Before the waiver program was created, Susan had been living without health insurance for a year.

I have lived without [health insurance] and it was not fun," said Susan. "Having to go directly to the drug companies to get my needed meds and them wanting your whole life story…I felt bad enough as it was and they made it worse. The waiver was like a godsend."

Susan's prescription costs to date have amounted to $44,000-an overwhelming cost for most. Even though Medicare Part D pays a good portion of that amount, the amount that is left unpaid that MaineCare and the ADAP program cover costs more than half of her yearly income.

"If I was having to pay that, I mean, it's hard living now," said Susan. "I couldn't even imagine having to take that out of my pocket and still afford to get by."

Susan has most of her health care needs met, but if she had MaineCare, she could access necessary services that would help her overall health, like dental care. As Susan would say, "The waiver is not full MaineCare."

Diane, 57, Presque Isle

After completing her medical assistant program at a community college in Indiana, Diane moved to Presque Isle to be closer to her sister and aging parents.

During her move from Indiana to Maine, she injured her foot. “When you sprain or injure your foot like that, it's going to swell so I didn't think anything of it,” said Diane.

Diane soon noticed a small sore on her left foot. She decided to treat it herself. Having had past injuries, and treating them with success, she felt comfortable tending to her own medical needs. Not having health insurance solidified her decision to forego medical treatment.

“About four days later I ended up in the hospital because I couldn't walk and I couldn't stand. I was so weak," said Diane.

Diane was diagnosed with osteomyelitis, an infection of the bones that can spread to surrounding tissue if not treated properly. Diane had her toe amputated. Within two weeks of her initial surgery, her doctors discovered the infection had spread and required further treatment.

“The infection that I had was just sort of creating a bigger problem so they did another test and found that there was so much deterioration and so much poison that, to save my life, they would have to amputate my leg," said Diane. “With everything that the doctors had said, I could have been dead by Friday because I was so full of poison and my body was fighting as hard as it could. I was to the point where I was closer to death than I realized.”

Diane was prescribed medication to assist her recovery. However, the medicine she was prescribed had adverse effects.

“I was breaking out in a rash all over my body and we couldn't figure it out,” said Diane. “I had an allergic reaction to a medicine. The doctor put me on a different medicine and due to circumstances, I swelled up so bad. I couldn't put on my shoe and I couldn't close my hands to do my exercises.”

Her original recovery time should have been only a few months. It has taken Diane from December 2016 to July 2017 to be well enough to be fitted for a prosthetic leg. “I have been fighting for MaineCare for that whole time,” said Diane.

Throughout her recovery, Diane was working a seasonal job answering emails for a company. “It was a likeable and a really fun job,” said Diane. “Since I didn't have to go outside, it was helpful for all of us because I didn't have to use the cars and have a chance of getting stuck in snow.”

Since her surgery, it has been difficult for Diane to secure employment. “I have not been able to find a job because of some of the stress of what's going on,” said Diane. “So to try to find another job…I can't find one right yet because the doctor will not release me [to work].”

She has applied for Social Security Disability Income, but has been denied. “I'm going to work as soon as I'm released when all these things are solved, but in the meantime, I still have no income,” said Diane.

In May 2017, while awaiting a response from MaineCare, Diane suffered a transient ischemic attack, also known as a mini stroke.

“It [a mini stroke] lets the doctors and you know that there could be another big problem down the road, so you've got to prepare for it,” said Diane. “That is sort of what we are doing now. We are not anticipating a full stroke, but you never know.”

The culmination of her medical challenges began to weigh on her spirit. “When you are having problem after problem, who wouldn't be depressed and down in the dumps most of the time?” asked Diane. “You have the physical problems, you have the mental problems now, and you have emotional problems because you're just frustrated and no one is really listening to you.”

Her spirits began to lift when, in July 2017, Diane was approved for MaineCare. “It [MaineCare] helped to relieve a lot of stress,” said Diane. “There was no way that I could ever pay this back.”

Reflecting on her medical journey, Diane is appreciative of her family, friends, and church community that helped her through these unpredictable circumstances. “The problems that I had were just problems that no one could foresee,” said Diane. “To know that I am still here, how many months later is really a blessing.”

Kathy, Winslow

Where did your parents work while you were growing up?

A: "My parents were mill workers, Woolen Mill workers, so we traveled around a lot. I have two brothers and a sister."

What was your childhood like?

A: "Chaotic. I was the oldest child, so, it was kind of difficult for me. I felt like, gee, I had to go through the firsts of everything. I babysat my siblings a lot. It was good. We had a good childhood."

What have you been up to since high school?

A: "Raised my child and became a hairdresser. I've been a hairdresser for 32 years. I had to go to school to learn the trade after 10 years of being out of high school."

What types of employment have you engaged in?

A: "I've done Woolen Mill work, C.F. Hathaway shirt company, I've been a waitress, cashier. The typical, the whole gaming. When we were younger, my parents couldn't afford to send four children to school. Back in the day it was more, college was more for the boys than the girls so my sister and I didn't have college educations. [You would] take whatever job you could get. At 14 I picked potatoes. I was able to buy my school clothes for the first year. My mother didn't buy them, I did. I could pick out what I wanted."

How long have you been without health insurance?

A: "I think three years. I was notified by mail that I no longer qualified for MaineCare, like a lot of other people in my situation."

Do you have any medical conditions that require treatment?

A: "I do have emphysema and COPD and I need oxygen. I've slowed down a lot. When I get a cold now, I'm sick a lot longer than I should be. My oxygen level drops very low. I don't sleep well. I'm irritable. It all has to do with lack of oxygen."

How has lack of health insurance impacted you?

A: When the company showed up at my house and had to take all my [medical equipment], all of it because I couldn't pay for it. To have everything taken away like it has, it's just unbelievable. It's not fair."

Do you have any anxieties around your medical challenges?

A: "If I end up in the hospital, what am I going to do? Number one, I'm self-employed so that means no income if I'm laid up and then I have no way to pay for anything. I have no way to pay for hospital bills or doctor bills. I know I'm not the only person that has no oxygen. They have to choose which prescription to get because they can't afford the whole kit and caboodle."

Why is MaineCare important to you?

A: "Just being able to go to the doctor for a check-up and not having to worry if you find a spot or a lump and say, 'well gee, I can't get this done because...,' or getting your children in for whatever reasons that need to be taken care of. Not it be a total, break the bank to have health insurance. It's terrible."

Sam, Augusta

Sam’s family spent some time living in Connecticut, where they were happy with their health care coverage. They had access to dental and vision services in addition to health coverage for more critical challenges. When they moved back to Maine, they realized health coverage would be more difficult to come by.

Sam and her husband live in Augusta with their five children. She works at home, caring for her family, and her husband works part time at Walmart.

"Walmart's benefits are extremely overpriced for what they are,” said Sam. "Their deductibles are ridiculously high, their copays are high, they don't really cover a lot, and the monthly charge for the premium is ridiculous."

Sam’s husband was paying nearly $300 per paycheck for their two oldest children to have the same Walmart health insurance plan. To insure their whole family, it was going to cost nearly $800 every paycheck.

Sam looked over her husband's paystubs and realized his health insurance plan was devouring 75% of his income.

Sam and her family enrolled in MaineCare.

“I wouldn't trade MaineCare for the world," said Sam. “I love the preventative care and that we can get our day-to-day things especially for the kids, so they stay vaccinated. They can go to the doctor when they need it. When I had pneumonia, I was able to go to the doctor and get treated.”

Sam and her family are happy with the preventive coverage MaineCare offers. However, when major medical challenges arise, they have found it difficult to get the health care that they need.

Sam's husband has two herniated discs in his back as well as degenerative disc disease. He has almost no cartilage in both of his knees.

"It's really bad because every year, at least once or twice, he winds up having to be out of work for something," said Sam.

Last year, he slipped a disc in his back. His doctors did not realize his health challenge would be a permanent condition.

"They thought it was a muscle spasm and he was put on muscle relaxers for almost two months which left him in a vegetative state on my couch," said Sam. "They didn't realize he has a pinched nerve because his disc had slipped."

Sam's husband quickly developed fractures from his knees down to his ankles.

"He literally walked to and from work every day until he physically could not move anymore," said Sam. "He had to be out of work for months for those fractures to heal."

Sam's husband was administered medications that altered his mood. He wanted something that would work long-term that did not impact his personality significantly.

"What they give him is narcotics and that's it," said Sam. "He didn't want it and I don't blame him. He would rather live in pain than have a narcotic addiction and I can't argue with that logic."

Sam's husband tried to seek out alternative options that would help him address the root cause of his medical challenge.

"He saw a surgeon who asked him what insurance he had, and then refused to see him again," said Sam. "Literally just walked out. It's really hard because he can't get the medical help that he needs."

Without MaineCare, Sam’s family would not have health insurance. They are happy to be covered, but disappointed that some of their major health challenges are not being met.

“I am extremely grateful that we have MaineCare," said Sam. "Something as simple as getting our flu shots or something like that would be extremely difficult. But, after seeing what Connecticut has and then seeing what we have, it doesn't make sense because there are so many people here in need.”

Cassandra Provencher, 33, Sanford

Cassandra was playing soccer with her daughter when her legs began to lock up. She had no idea what was going on. Cassandra was incredibly active in the past, but since having her fourth child has been busy caring for her family and maintaining her salon business, as well as helping with her husband’s business.

She immediately called her sister who is an athletic trainer. When Cassandra realized she couldn't stretch her legs at all, she rushed to a walk-in clinic. She was sent home with medication to help her with the pain.

After a few weeks, she began to feel better and was ready to join a parents versus kids soccer match with her daughter’s team. Soon, her legs began to lock up again. “I was like, ‘What is going on?’” said Cassandra.

When Cassandra went to the doctor for a checkup, she noticed a large mass on her leg and both legs began to feel numb. She was sent to the emergency room immediately.

She needed an MRI, but held off because the testing was too expensive. She walked out of the emergency room with fear, not knowing her exact diagnosis. “I was thinking, ‘My kids need me,’” said Cassandra.

Cassandra was one of many that had MaineCare up until state eligibility rules were changed. It was not until 2016 that Cassandra and her family learned about the changes to their MaineCare eligibility status. She now has insurance through the Marketplace Exchange. She is worried that other families are experiencing the same loss of coverage and increase in medical debt, as well as altering their life plans that no longer seem achievable under financial constraint.

“No one deserves to go into a doctor’s office or emergency room and have to worry about more bills,” said Cassandra. “For us, we can’t even get another loan.”

As a self-employed entrepreneur, Cassandra’s health insurance is nearly unaffordable. Her husband, also self-employed, runs a dry wall and construction business and has had to increase his hours significantly to help pay for their health insurance.

“I think people look at us and say, ‘You're in business, so you're rich,’” said Cassandra. “If we make more, we could lose our benefits. My husband is working later hours to help pay for health insurance, just about until 7:30 every night, sometimes until 10.”

Since losing her health insurance through MaineCare, Cassandra feels as if her access to health care services has dwindled. Aside from her struggles to find care for her leg, acquiring mental health services has been difficult as well.

“MaineCare—it changed my life, so not to have it and to go through this, it's scary,” said Cassandra. “I feel like my needs were met on MaineCare. Now, I don't feel like I get the one-hundred percent care that I need. Sometimes I feel as if my voice doesn’t matter.”

Her doctors are still unsure of her medical diagnosis, and she is worried that her medical bills will accumulate substantially as she must complete further testing.

“Having four kids and worrying that I have cancer, it’s scary,” said Cassandra. “Healthcare is so important. [It’s scary that] a doctor is worried about your medical bills, and if you would like to get further testing in an emergency room, you can’t because it costs more. Health care is supposed to be there to help and protect you.”

Cassandra often reflects on her positive experiences with MaineCare. In the past, she has had her children’s preventive, routine health care covered and has been able to focus on other aspects of her life without the stress that comes with medical debt.

Cassandra, being the second oldest child in her family, with her mother and grandmother, helped raise her four siblings and knows the struggle some parents face to have their children’s health care needs met. MaineCare was a significant help to Cassandra and her husband when they were just beginning their family. That’s why, today, Cassandra is using her voice to be a strong MaineCare advocate for other families in her community.

“I wouldn’t be who I am today without MaineCare,” said Cassandra. “If we can’t take care of ourselves, we can’t be good wives, mothers, sisters, friends, etcetera. It is inconsistent and frustrating when parents need to take care of themselves the right way to be there for our kids. I want others to be able to have what helped me.”

Pamela, Sabattus

Do you currently have health insurance?

A: "I just got health insurance back. I had been without health insurance since February."

Do you have any medical conditions that require treatment?

A: "In February, I needed to go to the doctor's. The job that I'm involved in right now, you have to wait at least three to six months before you can even get health insurance, and that's while you're employed. So, that makes it really tough that you have to wait that long of get health insurance while you're employed. It should be an automatic thing. But I do have medical issues that I needed to be covered and the insurance company that I had denied it so I couldn't get the testing. By then, I had decided that the company that I was working for, which was out of town, and I weren't a good fit so I left that job hoping to go right into another job. It didn't work out that way. So, it ended up that it took me time to get another job that I would agree to take and get health insurance. I still had to wait three months while being employed by this company to get health insurance when it should be an automatic thing. I've always worked and most of my jobs, when you got hired, you got health insurance. But this industry does not do that for you. So, you have to wait."

How has lack of health insurance impacted you?

A: "I couldn't go to the doctor's. I couldn't go get things looked at that I needed to have looked at. My doctor wanted to schedule an MRI. I couldn't go."

Why is Medicaid important to you?

A: "Everybody needs to be healthy. If you're not healthy, then you don't take care of your children, you don't take care of your life, you can't work, or your work creates a problem and you have no safety net to help you stay healthy so you can be a productive human being. Everybody deserves a chance to be healthy and productive and when you take health care out, we don't get to be healthy. Employers don't get their workers to work. What do you do? You know, what do you do?"

F.M.H., 63, Oxford County

For the protection of our storyteller, we will only be sharing her initials.

F.M.H. left home at 16 years old. She worked for 12 to 18 hours each day, completed her GED and some college, experienced homelessness, and purchased a home. "I broke my body trying to take care of the people that I was supposed to take care of," she said. "I've been trying to improve myself the whole way."

In the 1970s, F.M.H. was told that she had 25 years left to live. She was diagnosed with Hepatitis C, a blood infection that attacks the liver.

Her treatment would cost $1,000 each day for a six-month period, not including the various testing needed to treat the infection. She was without health insurance, and could not afford to pay for the treatment she needed to live.

Because of her medical challenges, F.M.H. had to take early retirement and is now relying on her Social Security benefits as her only form of income. She receives $418 a month which covers part of her rent and food.

In January 2017, her MaineCare application was accepted.

"I was fortunate enough to be so sick that I had to retire early, and I was able to get MaineCare because of it, which covered the cost [of the Hepatitis C treatment]," she said. "If I hadn't got that, we wouldn't be talking. I got lucky by being unlucky. I have medications right here on the table in front of me and without medication, I would die. It's that simple."

This summer, due to her bilateral neuropathy, she experienced blood vessel contraction which caused her leg to split open. After going to her doctor for some tests, she discovered her wound was staph-infected.

"Without MaineCare, I couldn't afford these medications, and without these medications, a staph infection becomes deadly to me," said F.M.H.

With MaineCare, F.M.H. has been able to get a shingles, pneumonia, and flu vaccination that she would not have been able to afford otherwise.

"These are all the things that I don't have the money to pay for and might compromise my immune system," she said. "It wouldn't take much to close my book."

She is thankful to be enrolled in MaineCare and has received help treating some of her medical challenges. Still, F.M.H. is having trouble accessing oral and mental health services.

MaineCare covers limited oral health services for adults over 21 years old. F.M.H. has not been able to get basic dental care like cleanings and fillings.

She has also had difficulty finding mental health providers that are knowledgeable in serving transgender communities.

"What they don't realize is just the pain of it," she said. "It's not just mentally, it's physically. I have a body that I truly don't believe is meant to be mine. I hate to say this but I've contemplated the easy out route. Last week I thought about it. There are days when I wonder, do I really want to continue? Do I want to go on? How long do I have to struggle?"

F.M.H. believes that all Mainers deserve health care, and by receiving the services they need, we will all begin to function as a community.

"It's all about how to save a dollar," she said. "There are lots of ways to save a dollar. If people that are sick are cared for, and they're not sick anymore, you're not spending money continuously to make them better. An ounce of prevention is better than a pound of cure."

John Miller & Suzanne Belanger, Springfield

John and Suzanne live in Springfield, 28 miles east of Lincoln and 50 miles south of Houlton. Given their health conditions, there are no opportunities to work or volunteer nearby.

Their only source of household income comes from John's Social Security benefits.

John is facing many health challenges, some of which include a spinal trauma and a double knee replacement. He suffers a great deal of pain each day.

Suzanne was homeless before living with John. She was food insecure, which contributed to her health challenges.

In November 2010, she had her first heart attack at 40 years old.

In March 2011, she had additional stents--tubes that are inserted into passageways in the heart to keep them open--implanted.

By June, she had another stent implanted, then again in October.

Currently, Suzanne is suffering from fluid build-up and swelling in her limbs in addition to her heart challenges. She is not able to receive the medical care she needs.

There are four medications she should be taking daily. One of her medications is $483 a month--over half of her and John's household income. She had to stop taking her beta blockers, blood thinners, and cholesterol medicine. She simply cannot afford them.

In June 2017, Suzanne thought she was having another heart attack. In the ambulance ride to the hospital, she was sure to tell the Emergency Medical Technicians that she has Charity Care. She thought the ride and the testing and treatment she would soon receive would be covered.

Much to Suzanne's shock, the ambulance ride was nearly $800.

"I could have had John bring me for $20 if I knew it wasn't covered," said Suzanne.

She received a bill for her X-rays as well.

In her struggle to get treatment over the past four years, her medical debt has escalated.

Without health insurance, her cardiologist will not see her. She has been denied necessary testing and treatment because she cannot afford insurance. Her current primary care physician has been her only resource for medical care.

Her physician's office allows her to pay for medical care on a sliding fee scale and they are flexible with her appointment times, but Suzanne is often unable to afford gas for transportation to and from the office.

Her medications consume all disposable income. "They don't check to see how many people are on life-saving drugs," said Suzanne. "Even the pharmacist said, 'How many more people are they going to kill?'"

John and Suzanne want to be able to live without the fear of another heart attack while uninsured. They fear that she could sustain a debilitating illness or even pass away because she doesn't have health insurance.

Max, Portland

Tell us a little about your life after high school.

A: "At first, it was fantastic. I won a bunch of awards from my high school; from the Boys and Girls Club, from my neighborhood for doing a lot of volunteer work. College was going great—A's and B's—a bunch of awards there. Last fall, I had a severe episode of depression which lasted most of the semester actually, from November on. That led to me being flunked out of SMCC and since then it's been me rebuilding my life, going to therapy, trying to get health care, and really just picking up the pieces."

Do you currently have health insurance?

A: "I lost health insurance when I was 18. The state did not tell us. I was on MaineCare. I got no letter, no phone call, no knock on the door. That was it. Then when I flunked out of school and went to go get my psychological help for my depression, they were like, 'You're not insured.' So, we found out the hard way that I didn't have health coverage."

How does lack of health insurance impact you?

A: "Really, it's just my doctor is not being able to get medicine that I could use. And then that whole like, what if something happens? I'm not covered."

Why is Medicaid important to you?

A: "Like I said, it's a ripple effect. If you have the one child who's injured, or who's chronically sick or what have you which happens, unfortunately, it then effects the siblings. It effects the parents at work, at school, in their lives. It can lead to disastrous effects which impacts everybody, even if you don't know that."

Janice, 55, Swanville

Janice was reaching for the sewing scissors she frequently used while making U.S. military uniforms at Little River Apparel when she felt something pop.

"I thought, 'Well it's probably just tendons and stuff moving over the bones,'" she said. "I just kept working."

It was not long before Janice began to experience painful spasms in her neck and back. She had ruptured multiple vertebrae.

Janice received workers’ compensation from her employer, but she still struggled to get the medical care she needed.

Because Janice does not qualify for MaineCare and cannot afford health insurance through the Marketplace, she needed to figure out a way to help pay for her medical needs, quickly.

Janice gained employment at L.L. Bean and Jackson Hewitt, a tax preparations agency, during their peak seasons. When her seasonal jobs ended, she was unemployed for three months before landing a job with a call center.

By November 2015, Janice was experiencing so much pain, she had to stop work completely.

"The pain was just so bad, and I was having such bad spasms," she said. "You sit there on the phone, so you can't stand and alleviate the pain. The headphone cord is too short to stand."

Workers’ compensation alone does not pay for all of Janice's medical needs. She must rely on past savings and her weekly workers’ compensation benefits.

"The basic expenses are so high these days," she said. "How anyone can live on less than what I am making is beyond me because I am struggling."

Janice is years away from qualifying for Medicare. She must continue to navigate in a way that does not completely deplete her of her finances.

"I am just thinking of what it's like for a normal, average person to go through this and to lose their entire savings to keep afloat," she said. "Some people lose their homes, some people lose their cars, and the state doesn't even stand by us."

Scott, 35, Leeds

Scott was having trouble walking, couldn't open his eyes, and his fingers were tingling.

At the emergency room, his providers ruled out a brain bleed, a stroke, and a tumor.

Scott was told that he could have a magnetic resonance imaging (MRI) scan to help identify the issue, but he would have to pay $600 up front, since he didn’t have health insurance.

He decided that the MRI was too costly and was sent home with the advice to take aspirin.

Three days later, Scott was admitted to a local hospital and diagnosed with a rare variant of Guillain-Barré syndrome. The only identifiable cause was a common cold, which Scott had had two weeks earlier. Within days of being admitted, he was completely paralyzed from the waist up.

Guillain-Barré syndrome is a rare and life-threatening autoimmune disorder that can affect anyone, regardless of age. The immune system quickly reacts to a virus in a misdirected way, attacking tissues that protect nerves, ceasing transmission signals to muscles. Soon, nerves lose the ability to communicate with the brain, and the body becomes paralyzed.

At first, Scott couldn't do anything except hear and move his feet. Within a week of being admitted, he was on a feeding tube, a ventilator, and had a temporary pacemaker implanted. The first five of many treatments he received cost $10,000 each. Without health insurance, the cost was insurmountable.

Knowing that Scott did not have health insurance, hospital staff stepped in to help his mom navigate Maine's Medicaid system known as MaineCare.

"I didn't know anything about how to do it; I didn’t even understand some of the terminology," she said. "At a time when I should have been focused on a family member in medical crisis, I had to spend several full days to do all this, to gather all the documentation, which was extensive, and to complete the application process. It felt like a system set up to catch cheaters rather than to help people in need. I had a lot of flexibility in my work and throughout this whole thing I kept thinking, 'What do people do who have to work a very rigid schedule?'"

The application process included at least two rounds of MaineCare interviews, answering the same questions she had previously addressed in writing.

"We are all very grateful that MaineCare was available. However, if I were somebody who were easily intimidated, if I were somebody who didn't have a very high level of education, [and] if I didn't understand bureaucracies, it would have been a very difficult experience," she said.

Several weeks into what appeared to be a quick recovery, Scott was diagnosed with a second autoimmune disorder, one that attacked his blood cells, rendering him critically ill once again, and requiring a round of two different, equally expensive treatments, and a much higher level of medical care and coordination of specialties.

Since Maine does not offer the type of specialty care Scott required, MaineCare covered his transfer out-of-state. Scott is still receiving treatments in Massachusetts, but is expected to make a full recovery and return to Maine soon. He is now able to speak and looks forward to using his hands-free technology to work from home as soon as possible.

MaineCare has enabled Scott to access lifesaving health care without the burden of enormous medical debt, from which very few people could recover. More importantly, Scott's mom believes that if he had not been approved for MaineCare, a full recovery and his return home might not have been possible. “In fact,” she maintains, "I don't think he would have survived without it.”

Patty, Shapleigh

Tell us more about your family's health care situation.

A: "My husband was taking some small part-time jobs. He taught at the local community college and I worked, self-employed, from home, part-time. He was slowly becoming more and more disabled. A few years before we lost our health coverage, we had applied for disability and been denied, and appealed, and denied several times and gave up. With disability, disabilities don't give up."

How did lack of health insurance impact you?

A: "In 2012, at that point, because we were low-income and had no children [under 18], we had no health insurance. We didn't qualify. Our state did not expand Medicaid when it had the opportunity so we were without health coverage. It was a very difficult time for us."

Why is Medicaid important to you?

A: "To me, people should not have to choose between having medical care and then having to go bankrupt, or not having medical care and risk dying. I know if my husband had not gotten the medical care that he did, I would be a widow and my children would have been without a father."

Bradley, Lewiston

Bradley worked for Western Maine Transportation in Auburn, fixing buses. Finding affordable child care services for his three children—now ages 9, 11, and 12—was challenging. Each paycheck seemed to only cover child care expenses. Eventually, he had to resign from his work to care for his children.

Without an income, Bradley was forced to utilize hospital emergency rooms when a health care issue arose.

"There were a couple of times I didn't have it [health insurance]," said Bradley. "You kind of hold off on going to the doctor's and go to the emergency room when it gets that bad. They can't legally turn you away by law. They can make it annoying and awkward, but can't say 'no' to you."

Bradley soon found work through Maine's ASPIRE program, a required work, education, and training program that most parents receiving Temporary Assistance for Needy Families (TANF) must comply with. He began receiving health care insurance through his employer, but was more worried about how he would get health care coverage for his children. Adding his children to his health care insurance plan would cost $250 per week, an amount that was simply too much for Bradley.

His worries faded once his children acquired health insurance through MaineCare.

Bradley's youngest child is living with Attention Deficit Hyperactivity Disorder (ADHD) and has been attending a private school focused on providing behavioral health treatment. This would not have been possible without MaineCare.

"The teachers say he is a completely different kid from when he started," said Bradley. Because of MaineCare, his two older children have been able to receive counseling services through Spurwink, a facility that provides behavioral health and education services.

"I haven't seen a [Spurwink] bill, but I can only imagine what it would be," said Bradley. Without MaineCare, Bradley's children would not have access to the necessary health care services they require, and Bradley would be struggling to juggle work and the ability to pay for child care, medical treatment, and the necessities of life.

Erica, 29, Waterville

Erica's family was looking for a change of pace and decided to move to Maine when she was in high school.When Erica entered college, her family faced economic hardship.

“I fell into a weird spot income-wise,” said Erica. “I didn’t receive a Pell Grant. I wasn’t eligible for anything but loans. Meanwhile, my parents declared bankruptcy. I got through sophomore year and couldn’t go back.”

While in college, Erica had been experiencing pain in her hands. Her doctors thought that she might have been experiencing symptoms of arthritis.

Despite the pain, Erica knew she wanted to go back to school. When she was younger, in Mississippi, she used to spend time with her grandmother at a local hair salon every Friday. She always enjoyed and cherished that time. Erica decided to enroll in cosmetology school in hopes that she would find fulfilling work.

After years of manual work in hair salons, the pain in her hands and arms has become much more intense. Suddenly, the work that she loves, that she has trained so hard for, has become nearly impossible. Erica can no longer see clients whenever their schedules allow. Instead, she can only meet with clients when her pain has been managed.

Her doctors believe Erica may be experiencing degenerative arthritis, but are still unsure of her official diagnosis. Without health insurance and a diagnosis, Erica has not been able to get the health care she needs. “I hear people talk about the expense [of health insurance],” said Erica. “Without care, I’m heading for disability which is very expensive. I try to take it a day at a time."

Erica has been without health insurance for three years and neither Erica nor her wife qualify for MaineCareor can afford private health insurance.

Erica's wife, also uninsured, requires medications to help regulate her Attention Deficit Hyperactivity Disorder (ADHD) and anxiety. Without them, Erica’s wife has difficulty managing her work.

Erica wishes to be able to manage her nerve pain, obtain the help she requires, and get the medications her wife needs. Because she cannot afford private health care insurance and does not qualify for MaineCare, Erica is forced to work part-time, in pain, struggling with the financial burden of medical debt.